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>  Yes, when I
>finally got a doctor that said "probably celiac, but we HAVE to do a biopsy
>to make sure", I said no problem.  I figured what was required was a
>diagnosis and if a biopsy was the only way to do, then so be it.  I would
>not have wanted to do a GF diet for a 20 mth old, that puts everything he
>could reach into his mouth, if there was no need to.  I know in Canada here
>all my medical is covered by insurance and I'm not sure the cost of a
>biopsy, but I would think the money involved would be minimal compared to
>the lifetime costs of a GF diet if the diet was not necessary.

Dear Karen,

After Cassandra had been sick for months, and gone through rigorous testing
- none of which had diagnosed a reason for her extreme malnourishment, a
family member read about Celiac Disease in Reader's Digest. (Actually two
family members, one on my side and one on my husband's side - both
believing Cassandra had the symptons and brought the article to our
attention.)

Having had no success through other avenues, my husband and I decided to
take a chance and put Cassandra on the gluten-free diet.  The change within
three days was so dramatic that it was like having a different child.
Armed with this knowledge, we proceeded to the doctor's office.  Our doctor
spoke with the pediatrician and although both were very skeptical, and
finally decided to preform a malabsorption test.

We were told, by the pediatrician, that no surgeon would preform a biopsy
on an 21 month baby, without a malabsorption test first.  At that time,
there was no mention of blood tests for antibodies, although taht was Dec
1991, and these may have come about later (?).

It was arranged for Cassandra to go back on the gluten and then be admitted
to hospital for testing.  Unfortunately, she very quickly reverted back to
the sickly child and refused to eat, hence the tests came back inconclusive
..  Hence, no biopsy was preformed.

Today, Cassandra is a very normal and healthy five year old, who is
continuing on the gluten-free diet.  She still reacts to gluten if she is
exposed to it accidently.  Maybe down the road, we will do a gluten
challenge and test for antibodies, but at the moment, both the doctor and
her parents beleive that she is MUCH better off on the gluten-free diet.

I agree with you that self-diagnosis, is not the answer - and although it
may have saved my daughter's life, I would not encourage anyone to make
major changes in their diet or lifestyle with out medical consultation.  It
is definately not easy to deal with small children and Celiac, but for the
moment, I'm willing to put in the extra effort and expense.

Unfortunately, I can't say what the answer is, although I believe that we
need to keep both ourselfs and our doctors informed as best as possible.

I figured that since I started all of this, I could at least try to
clairify the events.

Deanna
Kirkland Lake, Ontario, Canada
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